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Lucky years
After the diagnosis, Margo receives an ICD, a kind of pacemaker, as a precaution. This allows her to lead a normal life for a long time. But around 2016 she became increasingly tired. “When I came home from work, I had no energy at all to cook. Then I could only lie on the couch.” On the advice of her cardiologist, she opted for gastric reduction.
Margo calls the years after the operation her ‘lucky years’. She does a lot of volunteer work and sports a lot. “But then I started having a lot of trouble again. When I walked up a flight of stairs I would get completely out of breath, and at work I would have fits of crying because I could no longer do it. I wanted to continue doing as much as possible, but physically it was just not possible. I was up.”
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Rejected
A normal heart pumps about 60 percent of the blood that ends up in the left ventricle. At Margo, this so-called pump function is only about 25 percent. In addition, her muscle disease causes a lot of pain. At night she wakes up from coughing and it becomes increasingly difficult for her to walk. “I have asthma, heart disease, muscle disease and problems with my thyroid. It is a kind of interaction and that makes it difficult.” Her house has recently been equipped with a stair lift, and she now uses a wheelchair for longer distances.
Margo ends up on sick leave and has now been completely rejected. That provides peace, but also creates an internal struggle: “The people around me want to do everything for me with love. But I find it hard to let go. I needed the necessary conversations with a psychologist to be able to choose for myself.”
Stay positive
Many of her days look about the same, Margo says. She gets up and gets dressed, goes for a walk with her dogs. “Just a small part, really, nothing more is possible. I mainly sit for the rest of the day. To crochet, with breaks, or to paint. I’m always looking for something to do. In between I do what I can, preferably something around the house every day. And twice a week I have physiotherapy and go to a special sports group with other heart patients.”
Margo with her two dogs. Text continues below the image.
She doesn’t know what her future looks like. “My pumping function is not improving, but for now it is stable.” She is not afraid of dying, but she is afraid of leaving people behind. “I am a grandmother of two little ones. Now I just try to make as many beautiful memories as possible with them. Because they remain in their hearts. And yes, then I have to take it very easy the next day. But I can take that into account.”
“I like to look at what I can do, not at what I can’t,” says Margo. “Of course I sometimes see people on social media and I think: oh yeah, I can’t do that anymore. But overall I’m satisfied with what I can still do. I seize the day and enjoy it. I’m still here, and I’m glad I’m here.”
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2023-12-23 13:06:45
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